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Some Suggestions for Parents of Aspies

I’ve had a couple of parents ask me for advice about children with Asperger Syndrome (AS), in one case a child who was formally diagnosed and in another case a child who is suspected of being an Aspie but who hasn’t been assessed. I don’t claim to be an expert on these things, but based on my own experiences growing up and what I’ve read from others I can at least provide some pointers for further research.

One thing to note is that it’s worth seeking advice from people who are on the Autism Spectrum as well as Neuro-Typical (NT) people in regard to these issues. You should also keep in mind the fact that the experiences of people on the Spectrum vary a lot, in this post I try to represent some people on the Autism Spectrum who are quite different from me to give a broad overview of the issue. But you should read what others write too. There will be some kids on the Spectrum who are in some ways quite different to what I describe, there’s lots of ways to not be average.

Should Your Child be Assessed?

A common issue is whether a child should be assessed for an Autism Spectrum Disorder (ASD).

For a young child there is no reason not to have them assessed. It is expensive but any time a parent thinks that their child is an Aspie they are probably correct (most parents seem to live in denial if at all possible). In most first-world countries a diagnosis of an Autism Spectrum Disorder in a child will result in a moderate amount of government funding so the expense will be repaid. The staff of any medical center can usually provide advice on where to look for information about government funding.

Some parents refuse to have their children assessed because they “don’t want their child to be labelled”. If the child in question attends school the other children will notice that they are different and label them, so this really isn’t an issue.

For a child who is old enough to make their own decisions it’s a really good idea to consult the child first. Doing a covert assessment and then springing the result on them can be taken really badly. There is an Aspie tendency to not appreciate surprises, and “that person you spoke to was a psychologist who diagnosed you with AS” is the type of surprise that can be taken badly. Of course the down-side to giving your child a choice is that they may not choose what you want – it’s something you have to deal with.

Note that the child doesn’t need to be old enough to make decisions that are necessarily good before they need to be consulted. While an 11yo may make grossly ill-informed decisions they will make decisions that they care about and remember it for a long time if you ignore their wishes. Even if you aren’t going to give your child a choice you should at least inform them in general terms of what is happening if they are old enough to understand.

I’ve seen suggestions that informing a child who was diagnosed when very young should be handled in the same way as informing a child that they were adopted. Tell them when they are very young and fill in more details as they get older.

When a child is diagnosed they should be informed. It’s best to inform them of the diagnosis as soon as possible, obviously young children won’t understand it properly but they should have the amount of information that they can handle. I’ve seen this compared to informing adopted children, if you tell them when they are very young and provide more details as they grow up they will never have a shocking realisation. If a child isn’t informed then they will just wonder why the other kids are always mean to them for no apparent reason.

Benefits of Assessment

When a child has been formally diagnosed there may be government funding available to the school (sometimes to the extent of hiring an extra teacher) and the school can arrange a formal support plan. If the management of the school are not willing to arrange such a support plan (which is often a legal requirement – but they may not want to obey the law) then it’s best to find another school.

An assessment for a child should include a document of the details of their case. Any school that has a decent special needs program will need a copy of that to know exactly the issues that they are dealing with, if they just want to know the diagnosis as a one word summary then they aren’t running their special needs program properly. But for an adult a one-word diagnosis is acceptable as adults will generally already know what issues they face.

In some countries the parents of an Aspie child can apply for social security payments.

If the child happens to need to see a psychologist for reasons that aren’t directly related to an ASD then they need to be diagnosed first. The strategies that psychologists use with NTs tend not to work well with Aspies. As the issues related to an ASD can give an increased risk of depression and other psychological problems this is something that’s worth keeping in mind.

Finally it’s good if parents and children can understand each other, and getting everyone diagnosed is an important part of that.

Can it be Cured?

ASDs are the result in differences in brain development and can’t be cured as such. People who are on the Spectrum learn strategies for coping and the environment can be configured to make things easier for them. Trying to cure something that is incurable is not a good strategy, at best it will take resources away from more useful things. There are many reports of parents spending tens of thousands of dollars on quack treatments that do no good.

There has been a lot of medical research into the issue of whether ASDs are caused by vaccines, it all shows that there is no link to vaccination. Anyone who claims otherwise is a liar or a quack and should not be believed.

Chelation doesn’t do any good for anyone unless they are suffering from heavy metal poisoning, the symptoms of which are nothing like an ASD. Any organisation that has anything to do with chelation should be avoided as they will just hurt children.

There are ways of alleviating some of the symptoms, some of the supposed cures (such as certain diets) merely avoid triggers and allow children to emulate NTs more effectively. If you find a diet that makes things better don’t think that you have cured anything.

Emulating an NT

Pretending to be like other people is a useful skill. Children need to be taught how to act like other people when in public places, but they should be allowed (even encouraged) to act in a way that is normal for them when at home. Trying to emulate someone who is Neuro-Typical (an NT) all the time is exhausting and results in a decreased ability to do most of the things that one might want to do.

Don’t try to force Aspie kids to socialise excessively, it’s not going to be fun for them and it’s not going to do any good. Team sports such as cricket and football are probably a bad idea. Golf and other individual sports are better options.

Is it bad to be on the Spectrum?

So far I haven’t found a single report of someone who unconditionally claimed that an ASD made their life suck, although many people report that they have big problems from some of the sensory issues.

It seems that an ASD only makes someone unhappy if they are mistreated by other people because of it.

Sensory Issues

In most cases these are issues of degree, some things which irritate Neuro-Typical people (NTs) a little bit can irritate an Aspie a lot. But some are severe and require totally avoiding certain things, one example I’ve heard of is Aspies who can’t stand the feel of woolen clothing.

Discovering these things can be difficult as no-one really knows what other people experience. For example I don’t know how much my experience of strong sunlight differs from that of other people, but the fact that I like to stay inside on sunny days while most people don’t suggests that my experience is significantly different from that of others.

When an adult is diagnosed with AS they can usually determine what their sensory issues are by just thinking about what they have been avoiding for decades. Given enough time you can work out what things irritate you and avoid them (sometimes subconsciously). For a child you want a fast result.

For younger children there are companies that specialise in soft clothes which can deal with clothing comfort issues.

Noise cancelling headphones [2] are good for some sound related issues, over-ear headphones are good for people who don’t like things touching their ears and nowadays headphones are better than ear-muffs due to the recent development of wireless headphones and headphones with built-in MP3 players so they don’t seem so unusual. High fidelity ear-plugs [3] and custom made musicians earplugs [4] are two options for anyone who doesn’t have a problem with things being stuck in their ears.

Sunglasses (or prescription glasses with “transition” lenses that go dark in sunlight) can be used to deal with light sensitivity. There is also Scotopic Sensitivity Syndrome (SSS) also known as Irlen Syndrome and Visual Stress Syndrome in which certain colors cause problems and glasses with colored lenses alleviate the problem. Dealing with SSS can alleviate other problems that might seem to be unrelated (such as difficulty in recognising faces).

It’s probably best to try a range of measures and continue with the ones that seem to give a good result. The strategies that are used to determine minor food allergies can be used for minor sensory issues in terms of eliminating a lot of possible things and then reintroducing things one at a time to see what gives a bad result.

One thing to keep in mind is that minor sensory issues don’t cause an immediate obvious problem. They can over the course of hours cause someone to be more likely to become angry or unhappy than usual so some strategic planning is required to avoid problems. Adults can manage these things for themselves, young children need to be managed by their parents.

Selective Mutism

Selective Mutism is the condition of being unable to speak in certain situations. Some forms of it are reasonably common among people on the Autism Spectrum. Mild forms may not be apparent as people tend to avoid situations that trigger such problems.

Face Blindness

There seems to be a correlation between Face Blindness (Prosopagnosia) and ASDs. Face blind children can’t be sent to a regular school, the typical experience for such children is to have the other children take turns hitting them.

Food

Many Aspies have issues with food, one common issue is with food that is messy, for example dishes such as Paella are very unappealing to me. Japanese food is always very appealing to me, I like the way that the different items are separated and the consideration that is given to aesthetic appeal of the food. Also the Bento style of presentation where every type of food has it’s own compartment is appealing. If you serve food that is visually unappealing to an Aspie child then you will have trouble convincing them to eat it and you may convince them to avoid all variations of the food item in question – so make sure that healthy food looks good!

Food that tasted good today will probably taste good tomorrow, and every day for the next year. There’s no real reason not to eat the same food every day (as long as you get the necessary vitamins and proteins). There is a tendency among Aspies to not vary their diet much. So if an Aspie child is in the habit of eating relatively healthy food you really don’t want to break that habit, EG if the habitual meal is peanut butter sandwiches then offering a peanut butter and honey sandwich would be a really bad idea.

Finally sensory differences can have a significant impact on what food is edible, if an Aspie doesn’t like eating Broccoli it might be because they just don’t like it or it might be that Broccoli so horrible that thinking about it makes them nauseous. In the latter case it would be bad to force them to eat it. There are lots of web sites with information on the nutrition content of various foods, so finding acceptable foods that provide all essential amino acids and vitamins shouldn’t be difficult.

Note that minor food allergies can cause stress without showing any obvious symptoms. So a test for food allergies is a really good idea. Food allergies don’t cause Autism, but avoiding bad foods can make it easier to emulate an NT.

Stimming

But in summary stimming is performing some repetitive action (such as chewing a pen, spinning a coin, or twirling hair) to help manage stress or excessive excitement. Bouncing and spinning are well known stims even though most stimming is less noticeable. Redirecting stimming to actions that are more socially acceptable is OK, but note that it can be extremely difficult or even impossible for someone else to suggest a suitable replacement stim – which is a problem when dealing with kids who are too young to work it out for themselves.

Trying to prevent an Aspie kid from stimming is a really bad idea, that will just result in them being more stressed and therefore more difficulties for everyone else. It’s a good idea to encourage children to stim when they appear to need it or when they have been under stress. Note that things that are fun can be stressful, so don’t assume that allowing a child to do something they enjoy will be a good way of relaxing.

Touching People

It seems that most children have issues with being touched by adults, I’ve heard a few comedians make jokes about being forced to kiss aunties at Christmas and the jokes seem to resonate with the majority of the audience who aren’t on the Autism Spectrum. Aspie kids have more issues with this than NT kids, not only is being touched unwelcome but there are problems with perfume and make-up that can rub off. One of my mother’s friends used to wear plenty of make-up and perfume, I can still remember the happy day when I was tall enough that she couldn’t kiss me unless I bent down – so I stood up straight and avoided getting any make-up and perfume on my cheek.

I suggest advising relatives not to initiate any physical contact with Aspie kids, or if they do initiate it make it optional (EG ask “would you like to shake hands”). It must really suck for Aspie girls having almost 100% of their adult relatives wanting to hug or kiss them – 50% was bad enough in my experience.

Pets

Pet cats seem to be quite popular among people on the Spectrum, you can pat a cat when you feel like it and just leave it alone when you don’t want the interaction. Other pets can also work well too.

A recent trend is towards prescribing Assistance Dogs for kids on the Spectrum, Assistance Dogs International [9] has a lot of general information about such working dogs. It’s illegal in Australia to deny entrance to an Assistance Dog but a lot of companies still have written regulations and staff training procedures that specify limited uses for such animals (such as specifically only allowing guide dogs for the blind). They will change such policies if asked.

Home Schooling

Reports of ASD kids being happy at school are few and far between. The vast majority of reports are bad. The special schools for ASD kids that have military-style discipline sound really bad.

Seriously consider home schooling.

Emotions

Some degree of alexithymia is usually associated with AS. Because of this asking questions like “how do you feel?” will generally get a bad result. In some cases you can substitute questions for a better result, such as asking “do you want to do that again?” instead of “did you enjoy that?“.

It seems that parents are generally advised to tell their children that they love them, that may be good advice regarding an NT child. For an Aspie child that can be a really creepy experience, don’t do it. If you want to show your child how much you love them then make them a jam sandwich!

You will often see references to Aspies lacking Empathy, but they don’t lack Sympathy – I’ve linked to the Wikipedia definitions of the two words. Basically in this context “empathy” means using non-verbal signals to determine someone’s emotional state while “sympathy” means caring about what other people feel. It’s widely regarded that Aspies can be taught to recognise other people’s emotions, but a common experience is to be good (or even significantly better than average) at recognising the emotions of people but be unable to process the data.

Many people on the Spectrum report Affective Flattening (sometimes referred to as “Blank Affect”). This means giving minimal signs of their emotional state. So don’t assume that someone really is calm when they appear to be.

Gender

SPD can cause people to act in ways that don’t conform to the most strict gender norms. The most obvious examples are boys who have long hair because short hair feels bad and girls who have really short hair because long hair feels bad. There are lots of other examples such as boys who have a great aversion to dirt and girls who can’t wear cosmetics.

The gender norms are so strict that anyone who generally acts differently to other people is likely to do something that can be interpreted as being outside the range of accepted behavior for their gender.

If your child doesn’t conform well to gender norms you should consider whether it’s a sensory issue and also whether it’s an issue of just failing to emulate an NT well enough. You should also consider whether your ideas of gender norms are reasonable.

Of course there are Transgender and Genderqueer Aspies. If you suspect that your child really doesn’t fit the gender norms then it’s best not to question them about it, alexithymia makes any such conversations unpleasant and creepy.

Sexuality

It seems to be a common belief that parents should talk to their children about sex etc. I think that most Aspie kids would find that extremely creepy. The best thing to do is to just provide them with some books covering the relevant topics. Everything that they might need to know about sex is in a book somewhere.

It’s widely regarded that about 1/3 of the people on the Autism Spectrum are Asexual. Also it seems reasonably common for people on the Spectrum to be psychologically ready for a relationship at a later age than NTs. So if your child doesn’t have a straight relationship when you think they should then don’t assume that they are gay or bisexual and don’t try to force them to have a relationship on your schedule.

Alexithymia makes applying labels more difficult. So don’t focus on whether your child’s close friend is actually a girlfriend or boyfriend and whether that makes them straight, gay, or bisexual. Focus on whether they are with someone who makes them happy and inspires them to do good things.

Because Aspies tend to be literal a statement like “it’s OK to be gay” may be interpreted as “it’s not OK to be anything other than straight or gay“. So it’s best to be aware of the other possibilities, the LGBT Wikipedia page is a good place to start learning about such things.

Executive Function

It seems that ASDs are almost always associated with some degree of executive function disorder. Among other things this makes it difficult to plan things, get things done on time, and avoid playing computer games for an entire day. A written schedule with numbered points can help with this.

Aspies can be diagnosed with ADD or ADHD because of this which among other things can be used to preclude a later AS diagnosis (due to AS only applying to people who have not been diagnosed with anything else). Ritalin has been reported to help some Aspies, and caffeine works for me.

Aspies Need Space

Socialising requires more effort for people on the Spectrum, it’s draining and it’s not something that can be done all the time. You should expect that a typical school day will push an Aspie kid to their limit. When they get home they often won’t want to talk to their parents or anyone else, they will want to read a book, watch TV, or play computer games. Plan to allow them a certain amount of time to unwind after something like school. After school some young Aspie kids want to tell their parents about all the things they thought about during the school day, so there is quite a range of ways of unwinding after socially stressful events – but some way of relaxing and recovering is necessary.

There are reports of Aspies who really hated family holidays. Having their routine broken and being forced to spend a lot more time with their family than usual can be stressful. For a child in their late teenage years it’s a good option to allow them to stay home alone while the rest of the family goes on holiday. A week or two of minimal involvement with other people can be really relaxing and help them prepare for the next semester of school. Aspie kids tend not to have wild parties while their parents are away. :-#

Should the Parents be Assessed?

In most cases ASDs are genetic and inherited from a parent (there is research suggesting that in some cases it’s due to a de novo mutation but they comprise a small minority). Also it seems very rare to have asymptomatic carriers of ASD genes. So it’s best to assume until proven otherwise that at least one parent of an Aspie child is an Aspie.

An Aspie who gets diagnosed is probably going to do a much better job of parenting than one who is in denial, so I believe that geeky parents of Aspie kids really should get assessed.

I put this suggestion at the end because I know that some people will stop reading here.

I appreciate suggestions for this document, but please note that I don’t want to write a book. I aim to provide a list of suggestions that allows parents to do a Google search or ask on forums for more information. If you have a suggestion for a significant addition to this then please write it up in a blog post and send me the URL.